My baby suffers with epilepsy

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tase37

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Hi everyone my name is Tracey and we live in Finland. I had a beutiful baby girl on 18.12.2010 but all the happiness I felt turned in to tears and fear a couple of days after birth!
I was excited to take my daughter home that day and stopped off at a friends house to feed her, this is where she had her first seizure half way threw breast feeding, the seizure lasted 3min. So I took her straight back to the hospital and there she stayed for 3 weeks in ICU!
Now little Jessie is 2 months old and has suffered 5 seizures since arriving home. One seizure lasted 3 min and we had to give her first aid medicine.. medicine doze has doubled since arriving home and on the 23rd we are going to see the neurologist.
I'm really hoping to meet people on this forum as I feel really lonely and confused with all of this ! :ponder:
 
Hi Tracey,

What medicine has your daughter been described? Sometimes it can take awhile to find the right medicine or the right dose. Hang in there! I hope you are able to get some relief and sleep during this stressful situation.

Best,
Nakamova
 
Thank you :)
Her medication is hydantin, I'm not sure is this an international name for it as we live in Finland, if not then unfortunately I don't know what it is in English :/
 
Hi Tracey --

Hydantin is also known as Dilantin or phenytoin here. It's one of the oldest AED meds out there. It's often the first one tried -- in part because it's cheap, and in part because you can ramp up on it quickly. But ordinarily it's not recommended for long-term use because it can affect calcium absorption and have other side effects.

I recommend that you ask your neurologist about other potential meds if the hydantin doesn't work out. Has Jesse been diagnosed with a particular kind of epilepsy? Often certain meds have better track records with certain types of seizure disorders. For instance, infantile spasms often respond well to Vigabatrin. If she only has generalized tonic-clonic seizures, then the drugs of choice are carbamazepine, lamotrigine, sodium valproate or topiramate.
 
Thanks for that info :)
Jessie hasn't been diagnosed with any certain type..infact they haven't managed to catch the epilepsy on any tests yet but the seizures seem to fit epilepsy! So now her seizures are treated with epilepsy medication..this med seems to be holding them off rather well and the last 2 seizures were symptom way very mild.. all in all the direction is good at the moment :)
 
Good, I'm glad to hear she's responding to the medication!
 
Her last 2 seizures her eyes got stuck in the middle and her left hand moved back and forward..this lasted for approx 2min.. but the evening seizure she was hitting herself in the face so we had to protect her face with our own hand to prevent her from hurting herself..
 
hiya Tracey iam Lynsey aged 22,, Iam sorry to hear about jesse, ive had Epilepsy since i was in primary i have Grandmal Seziures and absent seziures which grandmal are ones where your fit and absent are ones where you blank out.. Epilespy can alaways go away in sum peoples cases in mine it aint goign to go away ot will alaways be with me now that ive been told.. My first fit my mum got the biggest fleg of her life i went from blue to purple,, my eyes rolled back,,tongue to back my throat, and eyes to back my head its not a nice thing to see i know what you mean i hope they get hur the right medication to stop her from having these fits,, a good drug thats knowing up in scotland is called epilum?? thats might taste nices for the little one to take taste bit like calpole x
 
Thank you Lynsey for your reply..everyday seems a bit easier but always the worry is there :(
 
Good luck with you baby girl! Be aware that the Hydantin if also known as Dilantin, is known to cause polycystic ovarian syndrome....which wont pose a problem now, but may later in your little girls life. All of the AEDs have side effects. As I am learning more and more after having this for 20 years a second opinion can never hurt! Good luck!
 
Also be aware that Dilantin effects the gums.

When I was on it my gums would often swell up if I didn't brush regularly.
 
Welcome Tracey

If looking for help support and information, you have found one of the best boards on the internet. Congratulations on that baby girl. I am sure she is very sweet and the light of your life.
All medication have side effects, some are mild others aren't. It may take a while to find just the right combination but if a cause for her seizures is found, that would be the best. I have had epilepsy for 10 years but don't know why. Don't be afraid to ask questions, there are plenty of nice folks here to help out.
 
hi

hi Tracey,

My name is Srini and I am from India.

I do have a son who is 22months old and has this seizure disorder. We are still getting treatment. Currently he is having Myoclonic seizures. His development is delayed we are going for Infant Simulation and Pysiotherapy daily.

I have been to Finland some time back, i was in Kuopio for some 2 weeks.

regds
srini
 
Hi!
Sorry to hear about your son and I hope that all help possible will help him with his developement! Were u studying in Finland or?
 
hi thanks for your wishes. really appreciate.

I am a software professional, i came there for Business. I was working with GE Healthcare IT.
 
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